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March 2, 2000, Thursday

SECTION: CAPITOL HILL HEARING

LENGTH: 21376 words

HEADLINE: HEARING OF THE SENATE HEALTH, EDUCATION, LABOR AND PENSIONS COMMITTEE

SUBJECT: REAUTHORIZATION OF THE RYAN WHITE CARE ACT

CHAIRED BY: SENATOR JAMES JEFFORDS (R-VT)

WITNESSES:

SEN. ORRIN HATCH (R-UT);

REP. TOM COBURN (R-OK);

DAVID SATCHER, SURGEON GENERAL;

SANDY THURMAN, DIRECTOR, OFFICE OF NATIONAL AIDS POLICY;

LOCATION: 430 DIRKSEN SENATE OFFICE BUILDING, WASHINGTON, D.C.

TIME: 10:00 AM. EST DATE: THURSDAY, MARCH 2, 2000

BODY:
SENATOR JAMES JEFFORDS (R-VT): The hearing will come to order. This morning we begin consideration of the Ryan White CARE Act which was first passed in 1990 under the leadership of Senators Hatch and Kennedy and reauthorized in 1996 under the chairmanship of Senator Nancy Kassebaum. I feel especially proud to be able to continue on the path forged by my colleagues ensuring that the healthcare and support services are available for people living with HIV and AIDS.

As many of you know, we have already begun working on a bipartisan basis to develop legislation to reauthorize the Ryan White CARE Act. We have worked with other committee members, held several stateholder meetings and actively sought our community input to ensure that we address the most important problems facing people with HIV infections. With the information gained from today's hearing we will soon introduce legislation to proceed to committee mock-up as soon as possible. For this reauthorization we mark 10 years in which the Ryan White CARE Act has provided needed healthcare and support services for HIV positive people around the country.

Titles I and II have provided much needed relief to cities and states hardest hit by this disease while Titles III and IV have had a direct role in providing healthcare services to underserved communities. As we will hear today, CARE Act dollars provide the foundation of care so necessary in fighting this epidemic.

Much has changed in those 10 years since the start of the Ryan White Program. By now there are very few people who can say they have not been touched by this epidemic. Yesterday I had the opportunity to visit with Ryan White's mother, Jeanne, who is also with us today. We talked about the impact of this disease, about the love ones it has taken and the damage to the lives of those that it's left behind about being infected and about being affected. We talked about her son, Ryan, and about my good friend, David Curtis, of Burlington, Vermont who testified before this committee in 1995 but who passed away just this past year.

As an advocate of the program and as a person living with AIDS, David helped me to understand the terrible impact of this disease. Ryan White and David and countless others worked long and hard to ensure that all people affected by AIDS have received both the care and the compassion that they deserve.

I know that our other witnesses today will continue on the path forged by them so well. We will hear details today by Surgeon General, Dr. David Satcher, about how HIV has continued to spread over the last five years and how it has become increasingly prevalent in rural and underserved urban areas and about its rise among women and minorities.

We will also hear of the significant successes over the last decade and especially over the last five years. Mother to child transmission has plummeted. Due to more effective outreach, counseling and testing of mothers at risk with HIV infection, our continuing insistence on reaching those women will help maintain that.

Our key success has been the AIDS Drug Assistance Program, though therapies and improved systems of care have led to impressive reductions in AIDS, death rates and the number of new AIDS cases.

From 1996 to 1998 deaths from AIDS dropped 54 percent while new AIDS cases have been reduced by 27 percent. However, these treatments are expensive, do not provide a cure and do not work for everyone. Furthermore, HIV infection rates continue to rise in many areas while the rate of decline in new AIDS cases and AIDS death is leveling off. Local and state health-care systems face an increasing burden of disease, despite our success at treating and caring for people living with HIV and AIDS.

Unfortunately rural and underserved urban areas are often unable to address the complex medical and support services needed by people with HIV infections. As we will hear today, underserved communities in both urban and rural settings have been heavily affected by the onslaught of HIV which has been especially hard hitting because these communities lack the necessary resources to care for people with HIV and AIDS. As we consider how to improve the CARE Act, we must continue to focus our attention on meeting the needs of the communities hardest hit by the AIDS epidemic and especially providing services for those who are infected and who are now receiving care.

We must realize that more can be done to provide early intervention services to help those who are most at risk to avoid the threat in this country. This disease has affected every facet of American minds that will continue to affect the lives of our citizens for years to come. Today we will hear from people directly affected by HIV and those who are involved in making the Ryan White CARE Act Program work. I will be looking forward to the statements by our witnesses and hearing their thoughts on how we can succeed with approving the Ryan White CARE Act.

I now turn to Senator Kennedy who has obviously been a leader and does tremendous work in this area.

SEN. EDWARD KENNEDY (D-MA): Thank you very much, Mr. Chairman, and thank you from all of us for scheduling this hearing and for your strong commitment to moving this legislation forward as one of the real priorities of this committee. It's been your position for some period of time, and all of us are very, very grateful to you for it.

As we take note, 10 years ago when we passed the Ryan White legislation, you were a strong supporter of the legislation then. I want to apologize to a number of our witnesses. We have a wonderful bipartisan atmosphere here this morning, and we're trying to continue that at the White House on the Patient's Bills of Rights at 10:30. And we're going to have a meeting with the president on that issue down there, so I'm going to be necessarily absent for a period while these witnesses make the case.

I want to commend you again for the witnesses. We've really got an extraordinary group. My colleague, Senator Hatch, who was one of the important leaders and continues to be in this area, I thank the good congressman for being here and a range of different witnesses that you mentioned--Jeannie White. I can still remember her testimony in the past--still rings in my ears--of the extraordinary efforts that she made in terms of support of the legislation. Reaffirms that old adage that individuals can make a difference, and what a difference she has made in the lives of so many of our people here in this country and by her example around the world.

So we're enormously appreciative of her presence. We have a special gifted person from Massachusetts on Panel 3 who has a story that just is so compelling and so powerful, and she'll share that with us. And we welcome Dr. Satcher who's done such an extraordinary job in leading this country in the areas of public health; Sandy Thurman who's been there long before probably many of us ever knew about this and continues to stir the conscience of all of us here in this country and about our responsibilities. I don't need to take any more time just on the witnesses, but I thank the rest of them for being here.

As you remember, Mr. Chairman, we were dealing with ideology 10 years ago rather than science. I think we've made important progress in trying to deal with science. That was really the struggle at that period of time, and it seems to me that we were able. The institutions responded the way that it should. We had a lot of emotion, a lot of ideology, some hard partisanship during those debates and the discussions to try and dismantle and actually vitiate this legislation. They were resistant.

And we have seen as a result of that, there are people in this room today whose lives have been spared because we have taken action. He haven't been able to do all the things that we've had. This has been a key component of it--research that's being done at NIH, other kinds of resistance that we have had in terms of the forms of discrimination against individuals. We have made some important progress. But this legislation is an absolute key element in terms of our country's response to some of the neediest people in the most desperate situations and circumstances, and its value to the nation is just absolutely unlimited.

So I'm very hopeful that we'll have the chance to process legislation in a timely way. We on our side are strongly committed to working with you to see that it's done. I thank all of those who will be making the case. We couldn't have a finer group of witnesses to speak to this issue, and hopefully we'll get about to the business of our country and with a speedy passage of this legislation. And I'd ask that my full statement and comment be made part of the record.

SEN. JEFFORDS: Thank you very much, Senator Kennedy. We'll now call our first witness, Congressman Coburn, who represents Oklahoma's second district and is also a practicing physician. He is a member of the Committee on Commerce where he serves on the Subcommittee on Health and Environment. Welcome. We look forward to hearing your remarks.

REP. TOM COBURN (R-OK): Thank you very much. Before Senator Kennedy goes, I just wanted to express my appreciation for him for all the work that he's done in this area and hopefully that we're going to build the bipartisan consensus we need in the House to move this as fast as the Senate seems to be moving.

SEN. KENNEDY: Thank you.

REP. COBURN: I have a special interest in this area, and I have for a number of years. The virus that causes AIDS and HIV was identified when I was senior in medical school, and nobody at that time could envision what we see today in our country--665,000 Americans, according to Dr. Satcher's numbers, have been diagnosed with AIDS. Over 400,000 of those people are no longer living. We have 900,000, as a conservative estimate, people living that are infected with HIV.

As you know from what we did four years ago and the reauthorization of Ryan White, it's my contention as a practicing physician that the best treatment that we have for HIV is prevention and that we ought to make sure that we have lived up to the obligations on prevention. Each year 40,000 new people in this country are infected with HIV. And I think the question before us, Senator Jeffords, is, "Why is that?" In the wealthiest country in the world, with the best scientists in the world with the best capabilities, the best public health programs, why is it that 40,000 people in this country are newly infected each year?

Meeting with Dr. O'Neill yesterday discovering the numbers and the changes, we know that there's a 25,000 difference between those people who died with AIDS and then those who are newly infected with HIV each year; and then we also know that somewhere around 1,000 a month just for the medicines to prevent them from progressing from HIV to AIDS. So not only are we talking about the lives that get impacted that don't necessarily have to be, but we're talking about a health- care system right now that's out of control. Senator Kennedy is going to do hopefully something about that as we deal with the Patient's Bill of Rights which I am a supporter--the cost and the resources that are spent on a disease that does not have to be.

And I think one of my concerns--this is my last year in Congress; I will be returning to my medical practice--is to make sure that we've answered the question, "Have we done everything that we can do to prevent the next person from getting this dreadful disease?" This is never a positive impact, never a positive finding for anyone no matter what the condition.

Current prevention messages I believe ignore historically-proven public-health practices that we have applied in this country in years past to limit and eliminate infectious diseases. Partner notification is an extremely effective tool for disease control especially for women. And what we've seen is this epidemic has changed. Number one is, we've seen that we haven't limited the epidemic. We haven't even reduced the epidemic in terms of the number of people that are infected with HIV.

But what we have seen is that the makeup of those people who are infected with HIV has drastically changed because now the majority of those people are either minority, women or children. And as this disease has moved, our prevention strategies need to be changed to address that.

Stephanie Williams (sp) is a black mother from South Carolina who believes she was in a mutually monogamous relationship, and she was infected by her boyfriend who has since died of AIDS. Pam McCrea (sp), another African American woman, became infected in the same way. She only became aware of her infected status after her mate had died. A woman who works an inner city clinic in New York was forced to remain silent while one of her HIV positive clients attempted to have a baby with his wife. He was unaware of his status of being infected with HIV. Another New Yorker only learned that she was infected by her husband after their child was diagnosed with AIDS during an autopsy. That's a terrible way to find out you're infected. A Hispanic woman discovered her status when her husband lay dying of a disease with no name, and a counselor suggested that she be tested for HIV.

These aren't isolated incidents, Mr. Chairman. All of these women were allowed to become infected by people whom they trusted. They did not know they were at risk, and no one warned them. In some cases the law forbade them from being notified. Now I asked you if the laws in this country forbid people from knowing that they're at risk and the epidemic has not decreased in terms of the number of HIV, does that not tell us that something's wrong with our prevention strategies? And that's what I ask for today. That as your committee looks at and drafts the legislation, that we for certain consider prevention as a cost-effective, life-changing method under which we can control this epidemic.

As more women have become infected with HIV, more children have become affected by AIDS as well. In the last Ryan White CARE Act Bill in the conference committee we had set up and asked that women who were pregnant be tested, and if they weren't that their children be tested because we now know--our science is excellent on this--that we can prevent the transmission. Some of the newer protocols lower that transmission to almost zero in terms of an infected woman with HIV in terms of transmitting that to their child.

The compromise out of our committees was that we would have an Institute of Medicine study that would make a recommendation as to what we ought to do when Ryan White was reauthorized. Well, that recommendation has come through. The institute of medicine has recommended that all prenatal visits, all women who are pregnant be tested; and if they're not tested, that their children be tested because in fact we can eliminate, we can prevent transmission of the disease.

We also will extend the ability to not pass that disease to other partners. Even if the treatment begins shortly after birth, we can now markedly reduce--even if we identify just in a newborn baby. This week Jama (ph) released a study done in Africa on breastfeeding. Breastfeeding is much more dangerous than we ever thought it was on the basis of this study--almost twice the rate of infection through breastfeeding than just vaginal birth. So we have learned a great deal about--and thank you to the funding for NIH and through the Ryan White CARE Act. We've learned a great deal about this disease.

But our concentration in the disease ought to be about prevention and care. We cannot ignore prevention because we're caring. We cannot ignore caring at the expense of prevention. We need to do both, and it's my hope as I work with the House as we come together in a bipartisan fashion that we will address both these issues equally, not in a confronting manner but in a manner that truly puts those people who are at risk and those people who have the disease at the top of the pyramid and say we're going to care about you in a way that we can be honorably carrying out the duties that we are entrusted with.

I believe that there are two underlying goals for the Ryan White CARE Act. We must first make prevention the priority. Even one new case of HIV is unacceptable to me as a U.S. Congressman and as a doctor when I know that we can prevent that. Second, we must ensure that we do not leave anyone, no matter who they are, behind by focusing only on AIDS and not focusing on HIV. And I believe many of the groups that have supported this act are moving toward that because we know now what our goal is, is to eliminate AIDS and not allow people to progress from an infection with HIV to AIDS. That's our goal. And the goal before that is to eliminate HIV infection in the first place. We must be sure that we no longer have to face challenges that ignore those two realities.

I'm sorry Senator Kennedy is not here because as a conservative coming from Oklahoma, the two people who have spoke in our nation that I read the most is a guy by the name of Robert Kennedy and a guy by the name of Martin Luther King. And Robert Kennedy outlined four blocks to effective leadership, and I think they've been impacted in this question of HIV and AIDS in our country. And I'd just like to just to summarize those four things and challenge the honorable members of the Senate and the House to not allow any fora of these blocks to effective leadership to get in our way.

And they are, first of all, being too timid, being afraid to take it on the chin for when we know what is right and to do it, to stand up and take whatever we need to take as elected members in this country of the greatest country in the world to do the right thing. So our first challenge should be not to be timid in approaching what will really fix this.

The second thing is to not sit back and be comfortable because we've had so many great successes because so many people are benefiting from the research and the care that has been done. We can do more, and we should not accept that. The fourth point he made was accepting the status quo. The status quo as far as HIV and AIDS and Ryan White CARE Act is unacceptable. We need to do more, we need to do it more effectively, and we need to do it more efficiently.

And then finally we should not allow expediency to block anything when it comes to the lives of the people of this country. And it's my hope, and it's my goal. Before we come to formulate legislation in the House, we're working with every interest group that we can to make sure that we achieve what is in the best interest of all those people that are affected. And I do not deny the fact that I believe, and it's my intent to try to continue to impress on our country and my colleagues that prevention is the most effective way of controlling this epidemic.

I want to thank you for the opportunity that you've given me to come before your committee. Senator Harkin, I appreciate your indulgence as well, and I'd be happy to answer any questions that you might have.

SEN. JEFFORDS: I have a question, but I know Senator Harkin would like to say a word. He has other commitments. Senator, go ahead.

SEN. HARKIN: Thank you, Mr. Chairman. I'm sorry to be late. I read over Congressman Coburn's testimony. He makes a lot of goods point in there regarding infected women who are pregnant. And people do have the right to know, and there are some areas we have looked at. I don't have--there are some states that I think are doing other things in terms of surveillance and stuff like that, that you know publicly put this out. They seem to be doing a pretty good job that way.

I guess my problem I have, Tom,is that we didn't go and test, we just don't go and put this out in any of the diseases that I know -- for any of the disease that we have.

SEN. COBURN: Sure we do--51 of them.

SEN. HARKIN: How many?

SEN. COBURN: Fifty-one diseases.

SEN. HARKIN: Published?

SEN. COBURN: Certainly we do. The way you control an epidemic, and I believe Dr. Satcher will back me up on this, is that you identify where the disease is and you contact trace and you eliminate the disease. Look at TB, what's starting to happen to us now in resistant TB. We're going to start using the public health practices on TB. We don't put names down. We don't put individuals down.

SEN. HARKIN: Fifty-one mandated? Are these 51 mandated?

SEN. COBURN: Fifty-one reportable diseases. I believe that's correct; maybe it's 53. And we're not proposing anything other than confidential. We've never proposed anything other than confidential contact tracing.

SEN. HARKIN: I see.

SEN. COBURN: You know, medical schools teach epidemiology and public health guidelines. And the way you prevent disease is identify where it is, try to eliminate transmission through education and accountability, and also notify those people who have an exposure so they don't, if they're infected, don't infect someone else. It's a common-sense approach that has been used around the world to control epidemic. I mean that's how we controlled small pox. I mean that's how we have done it in the past.

I understand the sensitivities associated with HIV, both in my own practice where I have been involved in diagnosing, not just in women--in children and in men. I understand those sensitivities, and I am careful to make sure that no judgments made on anyone because they happen to be the recipient of the disease. What they are is, they're the recipient of a disease. It doesn't matter how they got it. The point is, should that disease not be given to someone else by them and should they have the right to know, number one, that they're infected, and should somebody else know if they've been exposed and at risk for infection, not to make a judgment about the other person so that they won't infect someone else?

So I think prevention is an important part. It is the most cost effective. It's the most humane way to make sure someone else is not infected, and it's about people's lives. I mean that's what Ryan White CARE Act is all about. It's about lives.

SEN. HARKIN: I appreciate that, and obviously you understand this very well. I am cautious about making sure that we don't inhibit people from getting tested. We want them--

SEN. COBURN: I think it's a great concern. That was a concern that was raised when we did the Ryan White CARE Act in 1995 about prenatal testing, and one of the objections was that women wouldn't come in. And I think you're going to hear testimony, although it's not in the written testimony if you ask, I believe it's Dr. Birkhead, of what the New York experience was with that. It's totally unfounded.

And the point is, if that's true about HIV, then it's true about TB, it's true about every other infectious disease. It may not come in. Is the public health risk and exposure worth us doing the right public health strategy?

SEN. HARKIN: Mr. Chairman, I would just ask that my statement be made part of the record. I did want to take the opportunity to engage in a little discussion with Congressman Coburn because he is knowledgeable about this. I would just ask that my statement be made part of the record, Mr. Chairman, and again just state that it seems to me that when we passed the Ryan White Act, it was to serve as a safety net provided for individuals who were dying with AIDS. We've done a lot in the interim since 1990, and I think a lot of focus now ought to be put on how we provide help to people who live with AIDS. And it's estimated over 200,000 people with HIV are not receiving any medical services.

SEN. JEFFORDS: Fine.

SEN. HARKIN: So somehow we've got to start refocusing our energies in that area too, I think, Congressman.

SEN. COBURN: Half of them don't know they have it because we've had an ineffective prevention message.

SEN. HARKIN: And how do you propose that we get those 50 percent to know that have it to come in and get tested?

SEN. COBURN: Well, it's not so much as getting tested as to say that we as a public health priority in this country want people who have been exposed to know they've been exposed so that they can choose to be tested. If you have no knowledge--

You know, that's what happened to the minority women in this country. They have no high-risk behavior, and yet they've become infected with a disease because the person who had the disease has no obligation to share the fact that they have the disease.

SEN. HARKIN: I appreciate that. I'm sorry. You're right. This is an area I have great interest in. I congratulate you for having this hearing. And even though I can't stay, I want to read the testimony especially of Dr. Satcher and, Sam, both of you have done a great job in this area for so many years.

SEN. JEFFORDS: Thank you, Senator. You've been a real hero in this area too, and I appreciate your coming by and sharing your comments.

I also want to thank you for your service that you've given to us in this Congress. I'm sorry you're leaving. We're going to lean on you the best we can from now on until the day you leave, but you've been a tremendous help to all of us understanding the problems here. I wish you well.

SEN. HARKIN: Thank you. My commitment is to work with you to get a Ryan White CARE Act reauthorization.

REP. COBURN: Thank you very much.

SEN. HARKIN: Thank you very much, Tom. It was good.

SEN. JEFFORDS: Now if we could have Dr. Satcher come forward as well as the other two witnesses on this panel, I would appreciate it-- Sandy Thurman.

We are fortunate to have a second panel of distinguished witnesses representing the administration. First, I'm pleased to introduce--don't have to, Doctor, but we know you well--Dr. David Satcher, surgeon general of the United States. He is only the second person to hold that office while also holding a position as the secretary for health. We had a little argument over that, way back, but fortunately it all got worked out.

Dr. Satcher serves as secretary, senior advisor on public health matters and is director of the Office of Public Health and Science. So, Dr. Satcher, why don't you proceed with your statement, and I'll introduce Ms. Thurman in a minute.

DR. SATCHER: Thank you very much, Senator Jeffords. I'm delighted to be here today, and I appreciate your leadership in this area. I'm pleased to speak about the Ryan White CARE Act. I'm going to be brief because I have been marked for five minutes. I have submitted a full written testimony, and I'd be happy to respond to any questions.

We appreciate your willingness to call this hearing and to allow us to highlight the importance of the Act and the critical role we think this is playing in our public health response to HIV/AIDS in this country. We are also grateful for the leadership that you and the ranking members, Senator Kennedy as well as others, have placed.

Since its inception in 1990, the myriad of programs of the Ryan White CARE Act have assisted us in reaching those people who most need help, engaging them in assistance of care and increasing life and really enhancing the quality of life for those living with HIV/AIDS. The department is very committed to this program and this reauthorization, and it's a very high priority for us. We look forward to working with you to achieve that. Data concerning the epidemic are covered in great detail in reading testimony.

What I want to provide to you in this brief time is, one, the role the program has played in fighting the epidemic; two, the changing dynamics of the epidemic; and three, why it is so important to continue our response.

The Ryan White CARE Act has afforded us the ability to develop a much-needed system of care, systems that have largely been responsible for the marked drop in morbidity and mortality as we have witnessed in the last nine years. A decade ago when the CARE Act first started it was out of an urgently fought hospital care for people who are critically ill and dying of AIDS. Too few people who needed care were seeking it, two few points of services were available to those who did seek care, and finally too many people waited until they were in need of critical care, and they used the emergency rooms and clinics to fulfill their needs, both of which were inadequate to handle the need.

Today, thanks to the Ryan White CARE Act, a total of 51 metropolitan areas and 50 states plus territories provide essential medical services and social support services to a half million people infected with HIV. It has served as the safety net provider of medical and social services for individuals with HIV.

In the past decade since the CARE Act was started, we have seen a lot of progress. The number of new HIV infections have stabilized at 40,000 annually, and I agree that's far too many. But compared to what's happening in other countries, the fact that we have now stabilized the number and now should move rapidly to decrease this is I think of great importance. And as you know the developmental full- blown cases of AIDS developed has decreased significantly, and the numbers of deaths from AIDS has also decreased.

But I just want to speak briefly about the challenge of the changing epidemic because our work if far from over, and in some ways it's growing more complex. One reason for the added complexity of the shear volume of cases, we estimate that they are between 625,000 and 900,000 people living with HIV/AIDS in the United States. One-third of them, we feel, know that they have it and are in care; one-third know it but are not in care; and another third do not know that they are infected.

Another reason is that AIDS population is changing. I often point out that when this epidemic started in the early '80s, we sort of viewed it as primarily a white gay-male disease who predominantly were infected. That's no longer true. Even as you compare 1986 when you looked at the cases reported to the CDC, in that year even 25 percent of persons with new diagnosis of AIDS were African Americans, 14 percent Hispanics and only 8 percent women. Last year, however, 45 percent of new cases were African Americans, 22 percent Hispanic and, yes, 23 percent women. And if you look at the younger age group between 13 and 24, there's even been more of a shift in terms of African Americans, Hispanics and female.

Another reason for this added complexity is that we're dealing with a harder to reach population. I think that point really needs to be made here today. Many of those who have not sought care, fall into the category of the most vulnerable among us, including persons with addictive or mental health disorder, people who are homeless, people who are very poor. These populations also have comorbidities that make fitting them an even greater challenge.

So we're dealing with a different population of people. In fact all of this adds up a gaping problem of disparity. That's why two years ago the department was led to include HIV/AIDS as one of the six focus areas for eliminating disparities in health based on race and ethnicity. He also included as one of the two main goals of health to people to understand the nations health agenda for the next 10 years. Both initiatives have as their goal to close the gap on disparity through an emphasis on prevention. But in order to close the gap we have to make the channel. We believe that involving people in a system of care significantly increases our ability to prevent the spread of the disease.

Where do we go from here? Among our greatest challenges, I think, are to improve and expand access to care, but also to improve the quality of care. And there are some major problems in terms of the quality of care that people receive in unserved communities. And we also need to enhance the service capacity in underserved urban and rural areas in the country.

Access to quality health care is a major barrier. It's very clear that we will never control or prevent the spread of this epidemic until we are better able to enter and retrain people, especially vulnerable people in systems of care. As a public health service, we operate under the premise that to the extent that we respond to the health needs of the most vulnerable among us we actually do most of the work to help intervention.

But we must also build upon the system of community based medical care and support services that Ryan White has demonstrated so well, engaging them with creative strategies that will help reduce the stigma that surrounds the epidemic.

In conclusion, Mr. Chairman, the Ryan White Program has been effective in both rural and urban communities but not effective in others. We need to continue to improve. He look forward to working with Congress and others to enact a reauthorized CARE Act that can benefit all Americans with HIV. It was Henry Kaiser (sp) who said, "Problems are often opportunities in work clothes."

Today with deliberate action and the reauthorization of the CARE Act, I think we have the golden opportunity to dramatically alter this epidemic. Thank you.

SEN. JEFFORDS: Thank you very much. Next I'm happy to introduce Sandra L. Thurman, director of Office of National AIDS policy at the White House, a position to which she was appointed in 1997. Ms. Thurman has spent nearly 20 years working as an advocate for those with AIDS, taking a leadership role in this area at the local, state and federal level. She is one of the primary experts in the AIDS related issues, having been a founding member of the Cities Advocating Emergency AIDS Relief and having served as a member of the Presidential Advisory Council on HIV/AIDS. Ms. Thurman, we look forward to hearing your testimony. Please proceed.

MS. THURMAN: Thank you, Mr. Chairman. It is with mixed emotions that I appear before you today. More than 10 years ago when we embarked on this journey together, we had all hoped that this hearing would not be necessary, and we yearn to believe that a decade of slow but steady progress would produce a vaccine or cure or that prevention efforts would reduce the rate of new infections to nearly none.

But the fact of the matter is, that while we have much to celebrate today, our surgeon general has just reminded us of that the AIDS epidemic is far from over. And in many ways our job grows more difficult as HIV and AIDS moved into traditionally very hard to reach populations of women and young people and people of color and the poor.

HIV and AIDS has touched communities and each and every state across the country. And then big cities and rural towns, AIDS continues to devastate individuals and families and communities leaving them impoverished and suffering and in dire need of medical care and support. It's for this reason and a host of others that I come to offer the strongest possible support from the president and the administration for this committee's bipartisan effort to reauthorize the Ryan White CARE Act.

Since it's inception, the CARE Act has literally been a lifeline for hundreds and thousands of Americans, and over the years I've had the privilege to witness it's programs that work from a variety of different vantage points. As the executive director of AID Atlanta, the oldest and largest AIDS service organization in the South, I was honored to work with this committee in 1989 on the development of this vitally important legislation.

And as a recipient of Title I and Title II funds of the Ryan White CARE Act, I was proud to testify before this committee in 1993 on the successes already taking hold as a result of your thoughtful actions. And now as the director of the White Health Office of National AIDS policy, I'm pleased to be able to come before you again as we chart our course forward, one which seeks to make a great effort even better.

The CARE Act has become a model of health care delivery not only in the United States but around the world. It's a shining example of the good that can come from collaboration, coordination and concerted actions. The CARE Act has brought together Republicans and Democrats, cities and states, hospitals and community-based organizations, providers and people living with AIDS; and the result we attribute to public/private partnerships. It's created a continuum of care that's both compassionate and cost effective. This saves both money and lives.

The CARE Act taken as a whole stitches together a tapestry of services that enables us not only to respond to locally driven needs, but to reflect the ever-changing face of the epidemic. Title I, as has been mentioned, focuses on the cities hardest hit by the epidemic. Title II acknowledges that this epidemic has no geographic boundaries, and this Title has enabled all the states to develop consortia and systems of care that respond uniquely to the people in those states.

Title III helps to make primary care and early intervention services available to particularly vulnerable populations, both in rural and urban communities. Title IV focuses on the unique needs of women and children and families affected by AIDS. And Title V allows for special projects of national significance acting as a laboratory for the development of new improved AIDS care strategies.

But this Act is so much more than the sum of its part. As a whole it serves individuals and families in the most efficient and effective way possible. It's not a one-size-fits-all program. The CARE Act gives each state and community the flexibility they need to weave together a means for caring for their own in a manner that is tailored to indigenous strengths and circumstances.

When the CARE Act was originally created, we were sadly unable to do much for those who were sick, and many of the services provided were designed to help people die with dignity. Thankfully, much has changed in this decade. The CARE Act now is thought about living with HIV and AIDS.

Since the last reauthorization, biomedical research has brought hope and renewed optimism with the discovery of protease inhibitors and combination therapies. But without the CARE Act, these cutting- edge therapies would have been about as accessible in Selma (sp) or the South Bronx as they are today in South Africa.

The CARE Act has made the promise of biomedical research a reality in the lives of people living with HIV and AIDS in every corner of this country. Last year alone approximately 100,000 people living with HIV and AIDS received access to drug therapy because of the CARE Act. This is particularly important, given that half the people served by the CARE Act have family incomes of less than $10,000 a year, and the average drug cocktail costs about $12,000 a year. And we all know very well that drugs alone are not enough.

Primary care and support services are vital to ensuring both access and adherence to these very complex drug therapies. It is this comprehensive package of essential services that the CARE Act provides, and with very impressive results. And the CARE Act has helped to reduce the frequency in stay and length of stay of expensive inpatient hospitals by 30 percent. It's helped to reduce AIDS mortality by 70 percent. It's helped to reduce mother to child transmission by 75 percent, and it's greatly enhanced both the length and quality of life for people living with AIDS.

According to a study done by the National Center for Health Statistics, between 1995 and 1997 the nation has seen a 30 percent decline in HIV related hospitalizations resulting in nearly one million fewer HIV related hospital days. That represents a savings of more than $1 billion--money much more effectively invested in enabling people with HIV to live healthier and more productive lives. These positive outcomes highlight why the Ryan White CARE Act reauthorization is so imperative. We stand at a very critical juncture in this pandemic, and we must be sure that the success of the CARE Act does not breed complacency, but constructive action.

Increasingly, the AIDS epidemic of the United State parallels the pandemic globally with more and more different franchised people caught in the crossfire.

Last year the CARE Act served an estimated half-million people living with HIV and AIDS, and affected the lives of millions more. Nearly six of ten of those people were poor. They were also five times more likely to be uninsured than those receiving care elsewhere, nearly three times more likely to be African Americans and more than 50 percent more likely to be women.

Clearly the CARE Act has followed the path paved by this epidemic. But challenges remain as HIV and AIDS moves deeper into underserved communities already plagued by poverty, by homelessness, by substance abuse, and all of that in the midst of treatment demands and costs that continue to raise.

I'm heartened to see that the committee's bipartisan reauthorization efforts currently being developed is designed to retool and upgrade the existing CARE Act mechanisms to expand access to essential services particularly to vulnerable populations, improve the quality of care and increase the accountability of the overall program.

Surgeon General Satcher has mentioned existing health disparities, and the administration is firmly committed to moving a multiple front to eliminate these disparities. Certainly the CARE Act has played a vitally important role in that effort. And I applaud the committee for moving forward on proposals which increase program planning and responsiveness, create a better CARE Act to provide our linkages with emergency rooms and drug treatments centers and other places where people in need may enter a system of care, develop capacity to deliver essential services in very hard to reach rural and urban communities, create an incentive fund and drug reimbursement program to help remove existing barriers to drug therapy, and move forward on performance-based outcomes on those systems.

I believe that these program enhancements built on the CARE Act's firm foundation will lead this vital effort and the millions of lives who depend on it safely into the future. We in the administration look forward to working closely with all of you to secure the reauthorization of this landmark legislation. In 1990, shortly after Ryan White's death, this committee chose to build a legacy in his name. In doing so, the committee report read, "By dedicating this legislation to Ryan, the committee affirms its commitment to provide care, compassion and understanding to people with AIDS everywhere. Ryan would have expected no less."

Mr. Chairman and members of the committee, Ryan White changed our world and so has your gift to all of us in his name. As Reverend Dr. Martin Luther King once said, everyone can be great because everyone can serve. You don't have to know about Plato or Aristotle to serve. You don't have to know Einstein's theory of relatively to serve. You don't even need to know the second theory of thermodynamics to serve. You only need a heart full of grace and a soul generated by love. Mr. Chairman, this committee has demonstrated a heart full of grace in formulating, passing and now sustaining the Ryan White CARE Act. It is an act of service for people living with HIV and AIDS to all- enduring American family values and to good government at its best. Thank you very much.

SEN. JEFFORDS: Well thank you both for very accurate statements. I'm going to defer questioning. We have our first witness scheduled for the day here who always we have counter cares that keep us--but, so, Orrin I welcome you. I deeply appreciate your statement and ask you to stay if like as long as you want to and ask questions.

SEN. ORRIN HATCH. (R-UT): Thank you, Mr. Chairman, and I'm happy to see you, Ms. Thurman, and you, Dr. Satcher. And I'm very pleased to see you, Mrs. White.

As you'll recall, I was on the floor where I looked up at you and said we ought to call this the Ryan White Bill, and that's how it was named--the Ryan White Bill. And I have to say whenever I come into this room, I have many fond memories. I have some that aren't so fond too, by the way.

(Laughter.)

SEN. HATCH: Let me say that I have too fewer fonder memories in my 18 years as a member of this committee than of the many discussions and debates that led to the enactment of the Ryan White Act back in 1990. I commend you, Mr. Chairman, and the other members of this committee for holding his very important hearing today on the reauthorization of the Ryan White CARE Act. The 1990 law has already been reauthorized once, and I am pleased to remind everyone that in 1996 the Ryan White law passed unanimously in the House.

While some of the early Ryan White Act hearings mark out some floor debates how to measure a controversy, a strong bipartisanship has been formed to create and foster this Ryan White Act. And even though this is an election year with very limited legislative base, it is my hope that we can retain the spirit of bipartisanship that is characterized by the Ryan White Act since it was passed in August of 1990.

Let me just take a minute to explain why this $1.6 billion program enjoys such strong political and public support, and the answer is simple. The Ryan White Act works as you have been saying. Since the beginning of the epidemic, over 700,000 Americans have been inflicted with AIDS. This includes nearly 2,000 of my fellow citizens of Utah. The Ryan White CARE Act provides an array of services for 600,000 to 900,000 Americans who are HIV infected.

In my view, the local planning and decision making required by the Ryan White Act is the key to this program's success. And while there will always be quibbles about funding formula, there should be no question about the partnership among the federal government, the states and cities and the many nonprofit community organizations and service providers. Those partnerships have been a great success. So I'm happy to leave the hard work and inexact science of proposing adjustments to these formulas to individuals who possess the wisdom of Solomon like my friend, Chairman Jeffords, and member candidates, so long as Utah gets it fair share.

(Laughter.)

SEN. HATCH: But seriously I share the view of Chairman Jeffords. We need to look closely at the special problems that underserve rural communities. My main message here today is one of the need for continued bipartisanship. We are talking about a disease that can ravage both families and communities. It doesn't know race, ethnicity, age, gender or income. In this regard I wish to commend Senator Frist for the hearing held last week that looked into the devastation that AIDS is causing in sub-Sahara in Africa, and I intend to be part of helping resolve those problems as well. We're a great nation, and we should be doing what we can.

While the AIDS epidemic can leave behind a terrible cost in lost lives, disability and unfulfilled dreams, the struggle against this disease can be a no-brainer. I'm very please today in that we are fortunate enough to have with us Ms. Jeanne White, Ryan's mother.

I remember one day on the Senate floor, the debate on the bill was brought down and things were not going too well, and there was talk about even pulling the bill down. I looked up in the visitors gallery and saw Jeanne White, and she gave me the look that said, "keep on fighting." It was at that moment that we decided to change the name of the bill to the Ryan White CARE Act. Frankly I think that this change helped gain the support necessary to pass this bill. So your son played a significant pivotal role in having this bill passed and having literally hundreds of thousands of people helped.

By literally putting a human face on this legislation, the American public and members of the Senate can more easily see what this bill was all about--helping people who need our help. That's what the Ryan White CARE Act does. So I urge this committee to keep up the tradition of bipartisan support that this program has deservedly earned, and I support its reauthorization.

Now let me just say this. I have some difficulty with mandatory testing. I really think it ought to be voluntary, and I think that it's working quite well, and I hope that we'll keep it voluntary at least for now. At least that's my particular point of view because there are all kinds of fear that has to be resolved, and they're not easily resolved. Then to make it mandatory is not only more expensive than it needs to be, but it's really basically unnecessary under current circumstances. I hope you two at the table agree with me on that.

I've been asked, how can we strengthen the Ryan White Act. Well, let me just say this. We need to rededicate our efforts to see that those individuals infected with HIV and who are not getting care can take advantage of the Ryan White Act activity.

Specifically I'm concerned, as I mentioned in my remarks, about the problems of underserved rural and urban areas. For states like Utah and Vermont the physical distance between infected individuals in outlying areas in the cities where services are available can be a huge barrier to care. And even in the most heavily populated urban areas, the journey from one neighborhood to an adjacent neighborhood may have represented the a (gulf?) as deep as the Grand Canyon.

Also as the program continues to mature, I believe that any steps that you can take or you can make to increase program accountability would serve the interest of the public that the Ryan White Act serves. Finally, I would hope that the public health community will help Congress think how best to integrate Ryan White activities with the efforts to combat other related infectious disease epidemics such as Hepatitis B, C and TB. We've got to be concerned about those areas as well.

I hope I've added something to this, Mr. Chairman. I certainly appreciate your efforts, and I appreciate the efforts of our Democrat friends, Patty Murray in particular here today. And I appreciate the efforts of those of you who are doing such an excellent job in the federal government. Without you, we wouldn't be nearly as far along as we are today.

So I think all too often we criticize the federal government and bureaucracy that sometimes sends the impediment to getting things done. But literally in this area I think you've done a terrific job. I just wanted to give you my thanks. Thank you, Mr. Chairman.

SEN. JEFFORDS: Thank you, Senator. I know you have a busy schedule, but I invite you though to stay as long as you like to participate. .

SEN. HATCH: Thank you. It's a great honor for you to do that, but I do have to leave. But I really wish you all well, and let's get this bill.

SEN. JEFFORDS: Thank you. Senator Murray, I'm glad to have you here--one of my most faithful attendees. We will now--Senator Murray and I will now open questioning.

Dr. Satcher, it is clear that more needs to be done if we are going to stop the spread of this disease. Dr. Coburn has made some good points about the importance of HIV prevention. What has been done to address the transmission of HIV from mother to child, and what other prevention activities are underway that address Dr. Coburn's concerns?

DR. SATCHER: I think the efforts to reduce the transmission from mother to child is certainly one of our greatest success stories with this epidemic. We have reduced the spread by about 75 percent since 1994, 1995, and that continues. Even though as you know when you get to a certain point, you are dealing with the most vulnerable population. You're dealing with the women who are less likely to have prenatal care. So it is true that it gets more difficult, and we have to redouble our efforts.

The Ryan White Act, you know, is important because it allows us to target those populations better than we have been able to in the past, I think. So we anticipate that our success in that area will continue. Certainly over 90 percent of women who are delivering today are being offered testing and counseling. And very few refuse. Of the ten percent that refused, three percent have already had it; and another seven percent refused, and it's not clear why. And we obviously are targeting that population.

We are also trying very hard to really strengthen not only our education, motivation and mobilization programs to change behaviors-- and I must say when I came into this position, as you probably know, I was critical for example of the role that the church that was or was not playing, especially the black church and some leadership. That has changed, I think, considerably. And we in the last couple of years have seen dramatic leadership from churches and communities. The NAACP now has a major program.

So I think we're very close to getting (off the dime?) in terms of the fact that we've been stable in terms of 40,000 new cases a year. But I believe with the renewed effort that we are seeing and the aggressive efforts in the communities, we expect that number to begin to go down.

I agree with Congressman Coburn that prevention ought to be a priority, and we're looking for every way to make sure that it is. However, you cannot have effective prevention programs if you don't have systems of care. They actually go together. By being able to contain people with the disease in a system of care, it expedites our ability to control the spread of this virus.

But it also creates an attitude in the community that we're not just out to target people and label them and discriminate against them, but we care about people who are positive. And when people know that because they see systems of care like Ryan White, it helps us in our efforts to prevent the spread of this disease. So we need to do both of these things, and we will be doing them both much more aggressively as time goes on.

SEN. JEFFORDS: Mr. Satcher, there's been a discussion about moving from a count of living AIDS cases to actual HIV reporting as a means of tracking the HIV epidemic. Do you have ideas about incentives we could provide to help the states move more rapidly towards a system of HIV reporting?

DR. SATCHER: I'm sorry that Sen. Harkin had to leave because he raised the issue of name reporting. And as you know there are about 33 states that have name reporting today, and there are other states that our going to have name reporting. Some other states have what we call unique identifiers. They report new HIV infections, but they do not do it by name.

I think it would be great if every state could name reporting. I think in order to achieve that, we have to find a way to deal with the fear that people have in this country about what happens to their names even when those names are in the context of a public health system that is supposed to be confidential. And I think if we could come up with a system that would guarantee people that they would not be discriminated against because their name was on a list of being HIV positive, they would not be at risk for losing that job or what have you, then I think we could have universal name reporting.

But I think we still--this is not like other sexually transmitted diseases in terms of the implications and history of discrimination, et cetera, and that's what we're struggling with. We are fearful that mandatory testing and name reporting would in fact work against us in terms of people coming to be tested.

SEN. JEFFORDS: As you have explained, the AIDS epidemic continues to spread rapidly to the minority community. How is the CARE Act adapting to assist these communities in addressing their health needs, and please describe how the initiative undertaken through the Congressional Black Caucus is being integrated into the broader Ryan White Program.

DR. SATCHER: Well, let me just say I think the Ryan White CARE Act has certainly been more effective than most efforts in reaching the minority community including the been a majority of people served by the Act--African American and Hispanics. However, there's still people in the inner cities and the rural communities that we're not successful in reaching because, as you know, in addition to the fact that this epidemic is becoming an increasing epidemic of people of color and women and the young, it's also becoming increasingly an epidemic of people who tend to be outside of the system most vulnerable--addicted to drugs, very poor, mental illness. All of those issues we're struggling with now as we try to get this under control and get people into care.

So the Ryan White CARE Act can improve in that area we think, and one of the things that we are committed to doing is working to doing a better job of targeting. Congressional Black Caucus funds have been very helpful because they're specifically set up to say, "How can the government do a better a job of getting its resources to those communities that tend to be left out? How can we even send crisis response teams into communities so we can help people develop programs because those communities need them the most?". And I think it's added a lot in that regard, so it's going to help us to better utilize our Ryan White CARE Act funds in the future than in the past because it's developing programs in communities and among people where they have not been.

SEN. JEFFORDS: Mr. Thurman, we have heard from Dr. Coburn today about the growing rates of infection among women.

Why are women continuing to experience such high rates of infection, and how can the CARE Act improve the services for women with HIV/AIDS and how could you help reduce the incidence of further infection?

MS. THURMAN: Well, I guess, the women that we're seeing coming infected to date more often than not are from our disenfranchised--our poor, our women of color. And I think it speaks to what the surgeon general has talked about before in looking at health disparities in general in this country for women, for people of color, for poor people.

And certainly women are more at risk in this country now and around the world. We see more women becoming infected now in many parts of the world than men. But we do have to target the programs to women in ways that we haven't before. We have to be more creative. We have to integrate services that are now being provided to women to include HIV and AIDS services as part of looking at how the Ryan White CARE Act can dovetail with existing programs for women and children and families.

And so I think it forces us to be more creative than we have been in the past and to target women in different ways when we talk about prevention. The kinds of messages that we would target toward gay men would not necessarily be the kinds of messages that we would use to target women. So QDC is looking at very creative ways of targeting women with prevention messages in the communities where they live. Again I think we're talking about being more creative than we've ever had to be before, not only in reaching women but other vulnerable populations as well.

SEN. JEFFORDS: In your statement you discussed Care messages with points of entry into the healthcare system. Why are examples of these point of entries, and why is it so important to establish these messages?

MS. THURMAN: Now we see increasing numbers of women, as you just mentioned, infected with AIDS. We see increasing numbers of substance abusers infected with AIDS, increasing numbers of young people. And those people will enter a system of Care in different ways than our traditional clients have entered Care--for instance through a drug treatment program, through abuse programs, through women's programs, or through a maternal or child care program. And we have to make sure that all of these programs are linking up with existing Ryan White services.

And that's what's so important about our planning council and the fact that we have representatives from the mental health communites and from other communities serving on the planning councils and consortia so that when communities look at the needs of their particular population that they can make sure that they're targeting funds and integrating these services so that they're seamless.

I mean certainly we have gaps, that we need to look at existing gaps when we talk about reauthorizing the bill. But the CARE Act is designed for the very purpose of connecting in a way that makes these programs seamless and the participation of all of those providers is supporting that.

SEN. JEFFORDS: Thank you. Senator Murray.

SEN. PATTY MURRAY (D-WA): Thank you very much, Mr. Chairman, for having this hearing and for putting reauthorization of the Ryan White CARE Act as a high priority of this committee and doing it in a bipartisan way. I think it's extremely important, and I really appreciate your leadership over these years on this issue.

I think it's incredible that we have come as far as we have. Certainly back in 1993 no one expected us to be as optimistic as we are, and I think Ryan White has been a tremendous amount across the country and in many local communities to really provide us a focus on the whole person rather than just the disease and to really bring about a lot of good changes. And obviously we have more challenges ahead of us. I wish we did not. My friend, Mike, he said I wish that we had cured this by now.

But I think we have come a long ways. This is an excellent time to look at where we are now and how we reauthorize this Act to take care of the issues that are new and different than eight years ago. And I especially want to thank Jeanne White, too, for her tremendous leadership and compassion and remaining a real champion and a voice for the families who can't be here in this room today. We really appreciate it.

I do have a question. Ms. Thurman, you sort of mentioned it in passing, but it has to come to do with people who we really need to be looking at today that we weren't thinking so much about eight years ago. And I was recently contacted by a community health clinic in Yakima, Washington which is a fairly rural community, farming community who told me that they had seen a 300 percent increase in the number of Hispanic women with HIV. That to me is just overwhelming, and I think it kind of focuses--you were just talking about, how do we reach communities that we may not have been talking to before. You said we need to be creative. What are we looking at--cultural differences, language differences, different points of entry? And how do we go about dealing with that?

MS. THURMAN: All of the above? I think our challenge at this point in the epidemic is to go back and retool all of our existing prevention programs and all of our existing service delivery programs across the spectrum to include HIV and AIDS as part of their delivery. One of the challenges of responding to an epidemic is that we tend to sort of run on a parallel track, and you target the group that's most affected.

And now we have to be much more broad in our outreach to people on both the prevention and the Care front and include these messages and tailor make them. I mean, this is not sort of a one-size-fits-all epidemic. We've got to tailor messages directed particularly to Spanish-speaking women. We have to direct messages to people in inner city, African American communities. We have to target people in farming communities. Those messages are all very different. Those cultures are all very different. You know, we're sort of not sort of homogenized society. And we've got to spend a lot of time, and are spending time now, looking at our prevention messages and seeing how we can do better.

I mean it's nonacceptable that we've not had a decrease in new infections over the last decade. I mean we're right at 40,000 at year. There's something wrong with that, and we're taking a good, hard look at it, and I think it's everybody's responsibility to come up with some solutions that make sense. Again, it goes back to the health disparities. We've always had--we're adding insult to injury here. We've had problems in delivering services to women historically. We've had problems delivering services to minority communities historically. And then you put an epidemic like this on top of it, and you've just gotten--

SEN. MURRAY: In rural communities.

MS. THURMAN: In rural communities. So you've got a lot of problems, but it forces us to look not only at how we deliver AIDS services but how we deliver healthcare services across the board. It's an infrastructure challenge--if we don't have infrastructure to deliver appropriately.

SEN. MURRAY: It's the same population we have trouble getting mom to come in and get immunization s.

MS. THURMAN: Exactly. Same thing.

SEN. MURRAY: Dr. Satcher, would you add anything to that?

DR. THATCHER: Well, I agree with Sandy completely. I think our system is challenged by the most vulnerable among us. Ultimately it's no better in our ability to reach those kinds of populations, so our position is if we can't be successful at reaching our most vulnerable population--and our system is not successful, our system of public health and medicine. So Ryan White has helped significantly in that, but you have to keep coming up with innovative strategies.

SEN. MURRAY: And I would assume that those are more costly to reach because of different languages, different areas. It's not just one message, is that correct?

MS. THURMAN: That's correct, and I think it's a good point to make on the importance of the Ryan White CARE Act. The fact of the matter is that these programs that we're already struggling to reach the hard-to-reach population would absolutely collapse under the weight of an epidemic like this if we didn't have a Ryan White CARE Act.

DR. SATCHER: Yeah, but it's also costly when we don't reach them in different ways, and so I think we pay.

SEN. MURRAY: That's right. That's right.

One of the real strengths of the Ryan White CARE Act has been that it's offered to the local response, and I think that's important and we need to keep going down that road.

But as a result of that, there are some growing disparities in service and in different regions. And in my home state of Washington, particularly in King County, they've done an excellent job. And I know that there's other communities that don't have that same kind of level of effort and commitment.

How can we reward those communities and states that are doing the right thing but still provide some necessary incentives to those communities that aren't doing that? I mean I don't want penalize Washington State and King County for how far they've come, but I want to make sure that those communities that haven't stepped up to the mark we somehow make them do that. Do you have any thoughts on that?

DR. SATCHER: One thing that's important to know, why those communities have not stepped up. I think one of the values of the Congressional Black Caucus Initiative and the Hispanic Initiative is recognizing that some communities are better prepared in terms of infrastructure to step up and take advantage of opportunities and challenges than others. And what we're doing, and I don't think we've ever done it this well before, is really finding ways to better target those communities that have more difficulty organizing an effort whether it's prevention or care.

MS. THURMAN: I think we can also look at I think a committee of considering a set-aside under the ADAP Program for states that haven't been as generous in their Medicaid programs to provide drugs for people living with HIV and AIDS. I mean those are the kinds of incentives that we need to look at to make sure that they are responding appropriately.

And I do want to congratulate you on your great program in King County. It is a model.

SEN. MURRAY: Well, thank you.

SEN. PAUL WELLSTONE (D-MN): Thank you, Mr. Chairman. And I'd like to apologize for being late. Nothing is more important than anything else. Sometimes there are several things at the same time. It just drives you nuts.

One thing I want to say right away to you, Dr. Satcher, and to you, Ms. Thurman, is that I have noticed traveling around the country that it's a horrible and it's a false dichotomy where a lot of young people, a very high percentage are involved in community service, but when it comes to public service or political service, they view community service as good and they view public service as disreputable. And I think the two of you give public service a great name. I mean I just absolutely honor your work.

And I want to say to you, Dr. Satcher, that mental health work is real important to me. In fact we're going to have a hearing on the Mental Health Equitable Treatment Act that the chairman has put together for Senator Domenici and I. Your report, I can't even tell you--which also deals with the whole--with depression and suicide of children and young people, secondly in our state, secondly a killer of young people--is you have no idea how important it has been to organizations like SAVE and other organizations which are in the spirit of Mrs. White, just families that have had courage to step forward. Thank you--just great leadership.

DR. SATCHER: Appreciate it. We have some idea because all of our initial copies are gone that we, in fact, printed. That's never happened before.

SEN. WELLSTONE: I want to follow up on Senator Murray's question. I feel like this is also an example of public policy that's worked. I think it's made a real difference. I think we got some new population, and with that comes some new challenges. Correctional population is one example. You might want to talk to them about that. I invite you to do that on the challenges there.

The rural areas, from Minnesota we have a very active community. We have some great programs. We have an incredible community that's very empowered and does a lot of work in our state, but I keep hearing also about the problem of outreach, about the problem of people being isolated, about the problem of really getting prepared.

So one thing is, I gather both of you as you think about this with support, use of outreach activities, early intervention funds and especially in our rural communities, that's a Minnesota question; and I'm all for moving reauthorization rights forward. I know everybody else is too. Am I right?

DR. SATCHER: And I think it's really what the Ryan White CARE Act is all about--allowing us to do that better than we have in the past.

SEN. WELLSTONE: Ready for another Minnesota question before we get to a challenge? This is a little more difficult question.

We really have been shafted on the Medicare reimbursement rate. It's a disaster. We held our costs down, and therefore the reimbursement is horrible.

When we go through reauthorization, there's a whole question of severity of need which determines the amount of dollars, and one of the factors that contributes to the barriers is the Medicare reimbursement rate and getting the care to people. And what I would ask you is whether or not you might consider recommending that Medicare reimbursement in that state be used as a factor in determining severity of need. In other words when you've got such a low rate and it cuts down on the providers being able to provide the care and people getting care, would you at least consider that being built into severity of need?

DR. SATCHER: Yeah, I think the Ryan White CARE Act allows us to look specifically at different needs in terms of states and those 51 local communities. And if there is a problem within a state, I think it allows us to develop a planning strategy and if we're recommending more planning money and say, what do we need to change in that state that would expedite getting care to people who need it.

SEN. WELLSTONE: Well, I would like to work with you on that. I'm sure, Mr. Chairman, some other centers and states that are in this position would want to do it as well.

I guess finally--

DR. SATCHER: I appreciate your point about the correction because we haven't talked about that.

SEN. WELLSTONE: That's what I was going to ask you right now. In your own words, where do you see some of the real challenges now? I mean we all celebrate what the accomplishments are, and let's start with some of the populations that are the toughest populations to reach, and maybe we'll start with corrections populations.

DR. WELLSTONE: The prison population in this country has grown so rapid in the last few years, and we know that the AIDS rate in the prison is like eight times greater than the general population. We've not done a good job of developing a coordinated system of care and infectious disease prevention and control that deals with people when they're in prison and when they get out, to make sure that whether it's TB or AIDS of whatever. We're working very closely within our-- CDC has some specific programs targeting correctional institutions. We have a lot to do there, but we're committed to--I think the Ryan White CARE Act will help us.

MS. THURMAN: I would like to add to that thought I think we really have to deal more aggressively with denial and with both federal and state and local systems, correction systems about the kinds of activities that need to be addressed inside the walls of correctional institutions, for like the denial we see in a lot of other communities. So I think structurally, while CDC certainly needs to work--and it's doing a great job working with individual correctional institutions--that this is a place where we need to look at systemwide challenges on a long-term basis, not necessarily in the context suggested--Ryan White--but overall.

SEN. WELLSTONE: I thank the two of you. I see Michael, however, I'm looking right at you.

SEN. JEFFORDS: Thank you very much, and as always we will reserve the right to pepper with written questions. Thank you for your responses.

Thank you very much.

Next I am privileged to introduce Mrs. Jeanne White, national spokesperson for the Ryan White Project, AIDS Action, a position she assumed last September. Ms. White if the founder and former president of the Ryan White foundation which she established following the death of her son, Ryan, who died of AIDS in 1990.

Her son's personal struggle within this discrimination affecting those living with HIV/AIDS led to her public advocacy work. Ms. White was instrumental in making the Ryan White CARE Act a reality. In addition, she has served on the boards of several national AIDS organizations.

Ms. White, we are pleased to have you with us.

MS. WHITE: Thank you.

MR. JEFFORDS: We also welcome Mrs. Lori San Clark of Hyde Park, Massachusetts where she lives with her two sons, having been diagnosed in 1991. Ms. Clark has gone to Fenway (sp) Community Health Center in Boston for about 10 years. She is well qualified to speak about the issues of access and care at the Community Health Center.

Ms. Clark, thank you very much for being with us this morning, and we share your experiences, and we thank you for testifying. Ms. White, please proceed.

MS. WHITE: Good morning, Mr. Chairman, Senator Kennedy and distinguished members of the committee. My name is Jeannie White. I am the mother of two beautiful children--my daughter, Andrea, and my late son, Ryan White.

On behalf of Ryan, AIDS Action and the men, women and children and families affected by this deadly disease, I am here to thank the United States Congress for your support of the Ryan White CARE Act. As I walked into the hearing room this morning, it brought me back to about 10 years ago. 1990 was a very difficult year for my family. My son, Ryan, was in the force for the fight of his life against the HIV disease he had contracted as a result of the use of his Factor VII used to treat his hemophilia.

Across the nation families like mine were hoping against hope for a miracle to end this dreadful disease. Shortly before my son passed away in 1990, Senator Kennedy contacted me about naming a bill after my son called the CARE Act. A few days later Ryan died. All my hopes of Ryan beating the odds, finding a cure and praying for miracles were gone. The whys in the house could not be answered. I remember feeling depressed. I wanted to cry and feel sorry for myself, but I had a powerful support team that wasn't about to let me be silent.

Senator Kennedy called to try to get me to come to Washington, DC to urge Congress to pass the new-named Ryan White CARE Act. It helps individuals living with HIV and AIDS with nowhere else to turn.

If you've ever lost a loved one, you know how painful and draining that can be. Senator Kennedy and Hatch told me that I shouldn't be afraid, that I was a mom talking to people about what it was like to watch my child live and die from HIV and AIDS. They said we have 23 Senators lined up for you.

I was very, very reluctant because I felt like I was not smart enough. I felt like I was not a strong enough person. I was concerned that I might hurt the cause instead of help the cause. But Senator Hatch reassured me. He said, "You're a strong woman. You represent the voices of mothers." He said, "I know you can do it."

I then thought of something Ryan had said that gave me the strength to come to the Capitol Hill. He said, "I'm not afraid of dying, Mom. It's how you live your life that counts." If Ryan hadn't been afraid of dying then how in the world could I be afraid of 23 Senators?

Well, I went to Washington, and I really didn't feel like I did great, but for the first time I felt like just maybe I could continue Ryan's mission of helping people with HIV and AIDS. I hope that trip to Washington helped pass the original CARE Act. I hope it helped in giving back something to all the wonderful people who stood by us and helped us in our struggle.

So many sons and daughters have died. Ryan would want us to help those who are alive today. He would want us to provide the treatment that he did not live long enough to benefit from. The legacy my loving, understanding, wise son has left me is this--we must do everything we can to help each and every person who has HIV and AIDS. I'm so honored that the Congress named this bill after my son, Ryan. My boy once said to me, he said, "Mom, I want to be the first kid with AIDS to speak out, fight back and win."

Members of this committee, my son gave me the courage to continue this battle, to fight until no mother has to feel the pain and the loss of a child to AIDS. While this legislation could never replace my son or emptiness I feel today from that loss, I am happy that a program named after Ryan has benefitted hundreds and thousands of men, women and children and families living with HIV and AIDS.

Even in this bright air of hope, it sometimes seems like the darkest days are still among us. Unfortunately others still face the fear, the pain, the discrimination that Ryan knew oh, so well. I witnessed firsthand the ravages of this disease. I know the terrible toll HIV and AIDS has taken on mothers, fathers and definitely sisters and brothers, grandmas and grandpas everywhere. Ryan was a mover and shaker. He was the first national voice on AIDS. He was strong, but he was still a boy and he was "my" boy.

Sometimes a mother just wants to reach out and do what moms do best--make everything better. I tried, but as his health deteriorated, it became clear that a mother's love would not save him from this disease.

The doctors told me Ryan only had three months to live, and he lived for 5 1/2 years. I am very, very grateful for every moment of the 18 years I shared with my son, Ryan. The CARE Act makes real dreams of compassion for people who are living with this disease. It provides care, drugs and services to those who face the struggles as my late son, Ryan.

Ryan never understood those who wanted to deny care to people with AIDS. Now the CARE Act ensures more people have access to care and services. This disease affects all kinds of people--black, white, brown, young, old, rich and poor and, yes, Republican and Democrat. We must make sure this program stays strong, that the people living with HIV and AIDS can live as long as possible.

As a mother dedicated to seeing that our sons and daughter living with HIV are taken care of, I urge you to reauthorize the Ryan White CARE Act. It is what Ryan would want us to do. And, yes, we ask about miracles. I think the Ryan White CARE Act has given small miracles to a lot of people. Thank you.

SEN. JEFFORDS: Well, thank you. That's a very moving statement, and I can't tell you how important Ryan's name has been. It's put a whole new face and new understanding on the epidemic of AIDS and HIV. We thank you for your continued leadership, and I'll have a question or two later.

Ms. Clark, thank you for coming today and sharing your story with us. As a person living with the HIV infection, we want to better understand how it is; so please proceed.

MS. CLARK: Good morning, Mr. Chairman, Senator Kennedy and members of the committee. My name is Lori. I'm 36 years old, and I'm the proud mother of two beautiful boys, one of whom is in college and the other is an all-American teenager. They're my pride and joy. My life has been a patchwork of experiences. I've had my ups and downs. I've worked in sales, retail, computers and technology. I've been on welfare. I'm educated, but I've done a lot of dumb things. More or less, I think of myself as a pretty typical American woman. As a single mother, I face the challenges of raising my children in a scary world, but I'm doing my best sharing my life's experiences with them and hoping to get them started on the right path.

I'm here today to talk with you about one aspect of my life that my sons don't know about and that's the fact that I'm HIV positive. In 1991 after reading a lot about African Americans being unknowingly infected with HIV, I became very concerned about my own health. Deep down I had a nagging suspicion that I might be one of these women.

I had had unprotected sex for most of my entire adult life. This seems crazy now, but at the time I didn't believe that AIDS could happen to me.

Like many women my age, particularly African American women, we thought it was a gay thing. Unfortunately, on February 8th, 1991 my test came back positive. I was devastated. It was the most devastating thing to find out my worst fear had come true, that HIV positive equaled death. In fact, I thought I would die right away. My first reaction wasn't about me; it was about my two boys. Who would raise them, how would they manage without me, and how would this affect their emerging lives?

You can't imagine the horror and the fear of a mother that has to face to the fact that she may have to die and not be able to raise her children with the possibility of not being there for them. My concern for my children so overwhelmed me that I didn't seek any medical care for nearly four months. In 1991 there really wasn't much medical treatment available for people with HIV. The outlook was very grim. My life was rapidly coming to an end. My family would be in jeopardy, and I was paralyzed.

Somewhere by the grace of God I found a lifeline in the Fenway Community Health System. What brought me to their door in 1991, I don't know. I had lived in the neighborhood for many years, and frankly as I said I thought it was a gay center. But from the moment that I walked through the doors to seek my HIV test, they welcomed me warmly, assured me that the process was confidential and counseled me that regardless of the results, that there were things that could and should be done to assist me. It's not an exaggeration when I tell you that without Fenway I would be dead today. The literally saved my life.

For the past nine years Fenway has been my soul source of medical care and mental health support. Even my medicine comes from them. These past few years every aspect of my life has been assisted by Fenway. They have an amazing group of doctors, nurses, counselors, volunteers, case managers; and they're always available.

AIDS drugs are helping lots of people, but they are very powerful and need to be monitored closely. I know at Fenway that they're paying a lot of attention to the details that are too much for me to handle. I could go on and on about the wonderful things that they've done for me and some of the little details that they take care of for me, but it would take an entire day.

Let me just say that if it were not for this wonderful bill called Ryan White, Fenway could not have been there for me and offered the services that have kept my life going for these past nine years. As senators, you know all the laws my number and by details. I don't know anything about that. What I do know and what I want you to know is that the law is a miracle for people like me.

Life can be rough. As I was learning to manage my HIV and as my doctors were finding out more and better ways to keep me healthy, another bomb was dropped. In 1996, just as the new AIDS drugs started to become available, my doctors at Fenway suggested that I enter a clinical trial and see if some of the new drugs could help me. After a series of routine blood tests, my doctors informed me that my kidneys were failing and that my life again was in jeopardy. My first thought was, "My God, it's taking over my body, and it's shutting it down."

Just as I started to have some hope, the bottom fell out. Needless to say, experimental AIDS treatments were now off limits and my only hope was dialysis. In 1997 I started dialysis and remain on it today. To date, I have been on three different AIDS drugs combinations. I'm hoping we finally found one that works for me, but there are no guarantees.

My medical life is complicated, and the only way it all hangs together is because I have a wonderful care team at Fenway that makes sure all the information is shared with everyone who needs it. One mistake and my life could slip suddenly away. Living with this fact is not easy, but it is bearable when services like those in Ryan White are given by professionals like my doctor, Nancy Norman at Fenway.

I used to live in the Fenway area for, it was actually 18 years. Now we've moved, and I live nearly 20 miles away; but I still go back for all of my medical needs, and they're my lifeline. On a day-to-day basis I focus on living. I'm working in retail, raising my son, living with my mother, and managing my illness; and that's a big change for me.

A few years ago I was paralyzed with the fear of dying. The bottom line is, I couldn't do it alone. Ryan White Care services helped me stay alive, and are the only things that make the quality of this precious life I have worth living. When you go to work deciding whether to keep this law alive, remember me. My name is Lori, and know that if the law stays alive, then maybe, just maybe I might too.

I thank you for this honor to talk with you today, and please reauthorize the Care bill now.

SEN. JEFFORDS: Thank you, Lori for a most moving statement-- beautiful. Our hearts go out to you, and thank you for having the courage to come here and express yourself as eloquently and as well as you have. And I am deeply moved by your statement, and you have certainly helped us all understand better what it's like to face the problems that you have faced.

SEN. WELLSTONE: Mr. Chairman, may I say thank you?

SEN. JEFFORDS: Jeanne, thank you so much for coming in to talk with us today. A large part of your testimony is your continuing efforts on doing what you have done to really help us in a very difficult area. You, more than anyone else, know this program. Are changes needed in the act that will improve access to service?

MS. WHITE: Well, I think we definitely need to see some changes, I mean, as the epidemic grows especially in different rural communities and your low-income families too. I think women, the needs of women needs to be addressed.

So I think it's an ongoing battle from when in 1984 when my son was diagnosed when we were at the misconception I think that kissing, tears, sweat and saliva spread AIDS. I mean I think we've come a long way. I mean, we definitely know we've come a long way in treatments, but it's been a slow process. I mean, there had to be education on AIDS to begin with. And we had to erase the stigma that it was a gay, IV-drug user disease, and we had to convince people that anybody could get this disease. It was everybody's disease. And then we had to continue from that, and then continue to work on drug treatment.

So I mean I think we've overcome a lot of obstacles since 1990 when Ryan died and the naming of the Care bill, but I think that it's an ongoing change as we look at the disease and see that what needs to be changed.

SEN. JEFFORDS: How can we help the people who are with HIV to seek care earlier? What can we do to reduce the--

MS. WHITE: I'd like to say it's like Ryan said--"Let's make it a disease and not a dirty word." I think we have to make people realize that this is a disease and that it affects everyone and we don't want future generations to have to face this disease. And I think we have to encourage people who are sexually active to get tested, and I think that is, you know, a prevention measure of wiping out this disease--to encourage everyone if you have multiple sexual partners, to get tested for this disease.

SEN. JEFFORDS: I understand from your testimony early and aggressive treatment is so important.

MS. WHITE: Yes, definitely. You know, I mean--but the sooner you know that you have HIV, the sooner you can get on drugs and make your life more bearable, believe me, to be able to live longer.

SEN. JEFFORDS: Lori, thanks again for coming. As a person living with HIV infection, do you find support services like case management and transportation help maintain your health and well being?

MS. CLARK: I do, and I think that's it very important because you're discouraged when you have this disease, and you need to know that you have someone there to support you whether it be with transportation, the case managers, just to put you in touch with the different services that are available. It gives you the incentive to go on because you already feel isolated and alone, and you need to have that support system. It's very important. It's crucial.

SEN. JEFFORDS: Well, you're involved right now with the Ryan White programs. Can you tell us how we can improve it, what's needed in this legislation?

MS. CLARK: Well, the bill has helped me tremendously. I really wouldn't change anything. For HIV and AIDS I think we need to continue education, and the reason why I say that is because with the drugs--and we've made great strides with them--but with the drugs there seems to be a false sense of security that we've conquered it, and we haven't. It's very much alive, and it needs to be reckoned with. So from that standpoint I think we need to really educate.

SEN. JEFFORDS: How can we get women over the fear that you had and the reluctance that you had to be tested because they were afraid to find something? Obviously the denial, whatever you want to call it, is a huge barrier. How do we, under the Ryan White Act, get a reduction in that barrier?

MS. CLARK: I agree with what Jeannie said--to make it like any other disease. That the stigma attached, there's such a stigma attached that people are afraid to come forward. I know that was a big issue for me, that I was afraid. Would my job be in jeopardy? Would my children's lives be in jeopardy? And I think the fact, if we realize that it is a disease and it's not curable, but it can be maintained, and just to try to get rid of some of the stigma that goes along with it, I think people would feel more free to come forward.

SEN. JEFFORDS: Senator Reed.

SEN. JACK REED (D-RI): Thank you very much, Mr. Chairman, and I know with your leadership we will move forward very aggressively to reauthorize and reenforce the success to date of the Ryan White Act.

Lori, let me first say how eloquent your testimony was and how moving and effective and thank you very much. And to Mrs. White, thank you too for your wonderful testimony.

But also, as we mentioned yesterday when we had a chance to chat, the example of Ryan White has been so compelling in our country because in his person I believe he bridged a chasm between those who saw AIDS as a disease and those who saw it as some type of punishment from above--some type of moral defect, not a physical defect. And he was able, I think, in his person to bring us all together and to react to it as we should--as a disease, both as a country and as a government. And that's means care and research and prevention.

This is what the Ryan White Act is all about, and this is what we should be all about. So thank you for Ryan's example, for your wonderful testimony today. I don't have any questions other than to say that I look forward to working with the chairman to get this quickly reauthorized and approved and funded. Thank you.

SEN. JEFFORDS: Thank you, Senator Reed. I guess we all join you in those hopes and wishes, and I assure you that I'm going to move with all due-deliberate speed, or whatever the proper term is, to get this thing done.

Thank you both. You've been so helpful as always in reviewing his life. I commend you for all you've done. And Lori, you can be a big help to us as you have been, and we'll try to reduce the barriers that are there. Thank you. We'll be in touch with you as we go along.

On our fourth and final panel I would like to welcome Dr. Chris Grace, the director of Comprehensive Care Clinics, Fletcher Allen (sp) Care in Burlington, Vermont. Dr. Grace is an infectious disease specialist at the University of Vermont College of Medicine where he is also an associate professor of medicine and director of the Infectious Disease Unit. Dr. Grace helped to design and obtain funding for a rural network of HIV/AIDS Care Clinics which provide clinical access to care across the state of Vermont. These clinics are funded through Title II and III of the Ryan White CARE Act.

Since 1987 Dr. Grace has been caring for people in Vermont with HIV infection. He has been recognized with many awards for his work on behalf of the people with HIV/AIDS in the state of Vermont. Dr. Grace, we're delighted to have you with us, and please proceed with your statement, I'll introduce each of our panelists individually before their statements.

DR. GRACE: Thank you, Senator Jeffords. I'm an infectious disease specialist providing care for HIV in Vermont for 13 years. I hope to give you and the rest of the senators a snapshot of how Ryan White CARE Act funding has greatly improved access to HIV care throughout Vermont.

Two issues need to be recognized in reference to the HIV epidemic. First, there's an increasing burden of HIV infection in rural America. In 1992 and 1995, the greatest annual increase in new AIDS diagnoses occurred in nonmetropolitan areas. Second, the HIV epidemic in rural America is changing. We are seeing increased numbers of women and people of color, increased HIV transmission by heterosexual and injection drug-user groups, more patients living in poverty, more patients with psychiatric illness and more patients with drug and alcohol dependency.

The struggle of the rural HIV infected person has been summarized in an article from the "Journal of Rural Health," and I quote-- "Compared with the urban counterparts, rural people with HIV reported a significantly lower satisfaction with life, lower perceptions of social support from family members and friends, reduced access to medical and mental health care, elevated levels of loneliness, more community stigma, heightened fear of their HIV status to be learned by others, and more maladaptive coping mechanisms."

We've received Ryan White funding first from the Special Projects of National Significance and currently from Title III. Prior to the Ryan White funding, HIV care expertise is limited to a single university clinic in the northwestern quadrant of the state. Patients who are either traveling two to three hours for their care each way were not receiving care at all.

Ryan White funding allows the development and ongoing support for a statewide HIV clinic program that we refer to Confidence in Care Clinics. The goal of this program was to improve access to HIV care throughout the state and to provide this care in a confidential and supportive setting. We use these grants to set up free clinics in rural community hospitals.

Along with the university basic clinic, there are now HIV specialty clinics in each quadrant of the state. Care is provided by a team of an infectious disease specialist, nurse practitioner and social worker. The specialist from the university travels to each of these rural clinics. Patients receive state-of-the-art medical care. In addition, social support and counseling, referral for psychiatric care and substance abuse counseling can be made.

Since our funding in 1994, we've cared for 426 patients in our small state. Fifty percent of those patients had AIDS when they first entered the clinic program, 25 percent were coinfected with Hepatitis C; 18 percent were women; and 15 percent were minority populations as compared to the rest of the state of 2 to 3 percent of the same population. Fifty-six percent of our populations are unemployed, 36 percent are below its federal poverty guidelines, and 40 percent were felt to be infected directly or indirectly by injection drug users.

We are currently providing care to 278 patients throughout the state. Travel time for HIV care has been significantly reduced from 80 percent of those patients who are living in the more rural areas of the state. Along with the rest of the country, we have seen a dramatic improvement in the health of our patients. There's been a marked decrease in death rate over the past three or four years. There is evidence of improved immune function, less hospitalization for uncontrolled infections, and in our most rural areas there has been actually an increase in the employment rate amongst our population.

A patient history gives a good summary of how the CARE Act funding has improved the lives of Vermonters. Helen is a 60-year-old mother of three and a grandmother of five. She had been married for 30 years. By the time she was diagnosed with AIDS, she had become a withered debilitated shadow of her former self and was facing death in the very near future. She lives in a town of 2000 where she worked and was an active member of the town's community.

The knowledge of her HIV infection would devastate her family and would ostracize her from her community.

She was not able to get care, and she was unwilling to get care there. The university clinic was 2 1/2 hours away, and she was too ill to travel that far. One of the CARE Act supported clinics is 30 minutes away from her home, and this is where she received her care. Confidentiality was maintained.

After eight months of care at the rural clinic, Helen had regained her weight and strength, and she had returned to work. She looked healthy again, and no one is asking her, "Helen, what's wrong with you?" when they see her--the question that I have been asked numerous times and a question that she is unable to respond to in her small town.

I have attempted to present you a glimpse of rural HIV epidemic in Vermont. The barriers facing our patients are faced by all patients struggling with this illness in rural America. Remarkable success of the HIV program in Vermont would not have been possible without CARE Act funding. Speaking for my colleagues and the patients we care for, I thank you for your ongoing support of the Ryan White CARE Act.

SEN. JEFFORDS: Thank you. Thank you, Doctor. Now I also welcome Mr. Mike Kenn, chairman of the Board of Commissioners of Fulton County, Georgia. And he's also the chief elected official for the Atlanta eligible metropolitan area for Title I of the Ryan White CARE Act.

To date, this area has received more than $8 billion to $9.5 billion under Title I of the CARE Act. Before being elected to public office in 1998, Mr. Kenn spent 17 seasons playing for the Atlanta Falcons. His commitment to public service led to his work with Teen Georgia, The March of Dimes, and other such organizations--a dedicated man. Please proceed.

MR. KENN: Thank you. Mr. Chairman, members of the committee, thank you for the opportunity to speak about the critical needs of this Congress to reauthorize the Ryan White CARE Act. The HIV epidemic in America continues at unyielding veracity as epicenters remain in the nation's major metropolitan areas. Almost 20 years into the AIDS epidemic, the crisis is not over. But what is over is the long waiting lists for services, the long nights waiting in the emergency rooms for care, the tragedy of HIV positive mothers giving birth to an HIV infected child.

For tens of thousands of men, women and children in this country, the CARE Act literally has meant the difference between life and death, the difference between care and neglect. Local governments across this nation--51 in all--rely on the CARE Act to provide care, to sustain life, to preserve public health systems with the federal assistance provided by Title I. As chairman of the Fulton County Board of Commissioners, I serve as the Title I's chief elected official of the 20 Atlanta eligible metropolitan areas. We are home to 71 percent of Georgia's citizens who are living with HIV and AIDS. With almost 7,000 reported cases of AIDS and an estimated 8,000 additional cases of HIV, every part of our community relies on Title I of the CARE Act--the city, suburbs, and rural areas alike.

An estimated 9,000 clients are enrolled in our Title I Program. Seventy-percent of our reported cases of HIV and AIDS are among people of color, and 70 percent of the people served by Title I programs are people of color. Our CARE Act programs stitch together a fabric of care supported by other local, state and federal sources. Without the CARE Act, the unmanageable burden will be placed upon our public health clinics and emergency rooms. Our local healthcare system might well collapse in a financial way to providing all these vital services.

The situation in Georgia replicates patterns across the country. And 51 AIDS disaster-relief communities funded under Title I are home to approximately three-fourths of the people living with HIV disease in the United States. The way we care for people with HIV and the improved treatments we have to offer them have resulted in dramatic reduction in HIV related death.

Yet regrettably the number of people becoming newly infected with HIV has remained relatively constant. As a result, more people than ever living with HIV and AIDS are in need of care. In fact in 1995 and 1997 the average number of HIV and AIDS patients seeking services under the CARE Act increased 43.5 percent. There's no end in sight for the pressing AIDS emergency facing America, only changes in the challenges that possess it and progress in the way that we meet those challenges.

Just as the epidemic rages on, so too must our combined efforts to respond to this public health crisis. Title I of the CARE Act is key to our national program of care and our local partnership of providing it. Local decision making is the very foundation upon which the Title I of the CARE Act is based. And this local decision making works.

The CARE Act requires the establishment of the health service planning council in each Title I area with the responsibility of assessing and addressing needs. As a result of these individual processes and local identified gaps in services, the programs implemented by the people of Cleveland might very well differ from those created by the people of Boston. Each serves the needs of its community.

Title I is locally planned, locally driven, and locally delivered. Title I's local planning process represents a welcome departure from the top-down models of the past that so often fail to address local service needs. Local decision making ensures a rapid distribution of funds, community participation and financial accountability. It continues to be the best and responsive system to identify and remedy gaps in services and barriers to access at a local level.

Furthermore, Title I is the safety net for thousands of people with HIV. It sets a high priority on delivering quality health care and increasing access to services. The flexibility of the plan process has allowed our communities to quickly and efficiently respond to emergency treatments and the changes in the epidemic. As a result, many people with HIV disease are living longer with more productive and healthier lives, and many have been able to reenter the work force.

Mr. Chairman, with the Ryan White CARE Act, Congress entered into a contract with the taxpayers they'll provide care to and sustain the lives of people with HIV and AIDS. It is imperative that his contract between the federal government and local jurisdictions be authorized by September 30th, 2000.

Our task is not done, AIDS remaining a devastating and ultimately fatal disease. We have a mutual responsibility--you here at Congress and we at the local level--to continue our partnership to preserve our nation's health-care infrastructure to protect people from the ravages of this disease and to provide an opportunity to people with HIV to have dignity in living and when necessary, dying.

I thank you, Mr. Chairman and this committee, for allowing me to be here with you today.

SEN. JEFFORDS: Thank you very much Mr. Kenn--excellent statement. Our final member of the panel is Dr. Guthrie Birkhead (sp) who since 1995 has served as director of the AIDS Institute in New York, Department of Health. He joined them in 1993. Dr. Birkhead is a graduate of the Centers for Disease Control Prevention--DCP, Epidemic Intelligence Service Program as well as the CDC Preventative Medicine Residency Program. Dr. Birkhead, thank you for being with us. I look forward to hearing your testimony.

DR. BIRKHEAD: Thank you very much. Good morning, Mr. Chairman.

I'm the director of the AIDS institute at the New York State Department of Health, and I'm pleased to speak to you this morning on behalf of our commissioner, Dr. Antonio Novello.

The AIDS Institute administers the Ryan White CARE Act Title II funds that go to New York State, and I'm pleased to speak to you on HIV/AIDS in New York State and the importance of the Ryan White CARE Act in helping us provide comprehensive services to people with HIV and AIDS in New York. I would ask that my written testimony be entered into the record.

New York has been heavily impacted by the AIDS epidemic. We have approximately 140,000 reported AIDS cases in New York and approximately 55,000 New Yorkers currently living with AIDS, about 19 percent of the national total. The epidemiology of AIDS in New York is a little different and really is sort of indicating where the country is headed. We have a very large proportion of AIDS case in minority populations. Forty-three percent of our cases are among blacks and African Americans, 32 percent among Hispanics. Women are increasingly represented. Over a quarter of our cases in New York are now among women.

Injection drug use is the most commonly mentioned risk factor for HIV and AIDS.

Persons diagnosed with AIDS are just the tip of the iceberg of HIV infections. It's estimated that the number of persons living with HIV beyond the 55,000 with AIDS in New York is somewhere between 75,000 and 115,000 additional persons. We will have a better idea of the number of people and the number of new HIV infections each year as we move to HIV reporting in New York during the coming year.

In discussing the impact of the Ryan White CARE Act in New York, it must be noted that New York began to organize its response to the AIDS epidemic with the creation of the AIDS institute in 1983. By 1991 the state had built a system of care including ambulatory care, hospital care, nursing home, home care and case management supported by our Medicaid Program and by state grant dollars, by a range of supported services paid for my state and federal grant funds and our AIDS Drug Assistance Program or ADAP which began in 1987.

When federal Ryan White funds became available in 1991, New York's system of community-based health care and services was already well developed, and we used the Ryan White funding to essentially augment the system. Specifically Ryan White resources were used to augment the ADAP program--and I'll talk about that in a minute--extend primary care services to uninsured persons, fund new community-based case management supported service programs and establish Ryan White Care networks around the state. The networks are local groups of providers in 19 geographic areas in the state who work with the state health department to determine local program priorities and funding allocations.

New York receives about $285 million from all titles and sections of the Ryan White CARE Act, including $138 million in Title II. In turn, New York will provide about $143 million in state dollars under the governor's 2000-2001 proposed budget, not including Medicaid in those figures. Ryan White funding is therefore an essential source of support for New York's continuum of HIV services and has had a tremendous impact on the health and quality of life for New Yorkers affected by HIV.

One of the primary impacts has been to make care and services and therapies available to uninsured or underinsured persons. Our program has three components--first, our ADAP program which provides access to pharmaceuticals to uninsured and underinsured; secondly, what we call ADAP Plus which is an ambulatory care insurance program that covers primary care and laboratory services for HIV disease management; and third, a home care program which provides services to keep people in their homes and out of the hospital or nursing homes. These programs are fee for services. The approaches are client centered, seeking to empower individuals to access the needed services. And the programs are primarily funded by our Ryan White Title II grant with state funding.

In addition, New York has formed some unique partnerships with our Title I eligible EMA and particularly to support the ADAP program. Thus, our ADAP and uninsured care programs are an example of what can be accomplished by blending funding from all sources--state and federal--to ensure state-of-the-art care.

The combination therapies which we've heard about are really critical and have had a dramatic effect in reducing progression to AIDS and AIDS deaths. As a result, our ADAP program has experienced explosive growth in the number of persons accessing care.

In terms of active enrollment, in the last three years we've increased 124 percent from 4,600 a month to over 10,000 a month accessing our ADAP program. Our ADAP expenditures have increased 400 percent in the last three years from $2.2 million per month in 1996 to over $11 million per month in the ADAP program in December of 1999. The ambulatory care portion of the program has also increased dramatically.

Though ADAP has been able to ensure that all populations affected by HIV have been able to access therapy. We have over 80 percent of our participants in ADAP on triple combination therapy and 91 percent on two or more drugs. And we have had a pretty good success by race, ethnicity, gender, income and risk factors in getting persons covered. We have not experienced some of the disparities that you have heard, I think, in large part because of the comprehensive nature of the program.

But if not for the availability of the Ryan White funds for ADAP and increases in the ADAP supplemental funds under the CARE Act, New York would not be able to offer access to standard of care for HIV for all its residents.

The combination therapies not only allow people to live longer, allowing many to return to the work force, they also reduce the risk of HIV transmission to others--people who are effectively treated. However, treatment for HIV is not simply a matter of writing a prescription and paying the pharmacy bill. Quality health care, case management, treatment education and adherence programs are necessary to allow people to stay on schedule.

Successful adherence is particularly critical because HIV can develop resistance to the medications if the medication is not taken on schedule and doses are missed. Resistant strains could limit the effectiveness of HIV drugs in the future, and the Ryan White CARE Act in New York is now being used to assure that people not only get the drugs, but are able to keep on schedule and adhere to the therapy.

Another significant impact of Ryan White in New York is to be able to reach those populations not linked to the health care system and who are at highest risk, particularly substance users, communities of color, the homeless, women and children, youth, particularly youth on the street, and young gay men, and persons with multiple diagnoses--HIV, mental illness and substance use.

We have programs directed to outreach to those populations and get them into care. For example, we have located services in settings where affected populations receive services like substance abuse treatment centers, settings and agencies serving communities of color. We've located services in those facilities where people come to access other services, and we've brought services to the clients with mobile vans and home visits and other avenues.

In designing these initiatives and determining the relative priority, we've worked closely with our 19 Ryan White networks as I mentioned. We've also worked with our Title I EMAs and their planning councils and the private, not-for-profit and academic communities. All initiatives are planned and prioritized with the participation of infected persons and health and human service providers on the front line. I think this is another significant effect of the Ryan White CARE Act in that it's fostered the establishment of these local and state partnerships at many levels, contributing to our success.

The Ryan White CARE Act funds in conjunction with Medicaid and state funds have resulted in improved access to care, reduced hospital costs and reduced morbidity and mortality from AIDS. Hospital utilization for example has decreased 30 percent between '95 and 1998 from 65,000 hospitalizations to 45,000 hospitalizations. Length of stay has been reduced in the hospitals by 45 percent from 18.9 days to 10.2 days in 1998. And AIDS deaths have been reduced by 70 percent between 1995 and 1998.

Reauthorization of the CARE Act is critical to our efforts in New York to provide quality of care. I'd just like to discuss a couple of our recommendations. The full recommendations are attached.

Very quickly--we recommend keeping the existing title structure, including the supplemental funding for ADAP; secondly, maintain the existing base Title II funding formula and separate ADAP funding formula based on persons with AIDS. HIV is probably a better way ultimately to do the funding formula, but many states like New York do not have the data yet to do that. A study probably is a good idea to look at the funding formula issue. Eventually I think most states will have HIV data that is a better way to try and look at that questions.

All portions, all titles of the Act need increased authorization funding of levels because of the increased case loads as people live longer. We further recommend that the CARE Act allow ADAP supplemental funds to be used for medical monitoring, medication adherence, laboratory testing, which are critical to the success of the drugs. Getting people into care as quickly as possible is important, and therefore CARE Act funding should be allowed for a full range of outreach activities and HIV counseling and testing. In all Ryan White funded settings this is currently allowed in Title III and IV, but not in Titles I and II. That should be put in there.

Also we need flexibility administering the CARE Act funds.

We recommend that there not be a cap put on quality assurance and quality improvement activities. And quality management programs should not be specifically designed in legislation. These are important programs, but we need the flexibility to design those programs as appropriate for our specific service delivery system.

Finally, you should not require in the statute that we conduct planning a priority setting based on the needs of individuals not in care. This information cannot be routinely gathered at the state and local level without a major research program which I suspect would not be cost effective.

I hope my remarks have illustrated the critical importance of the CARE Act to New York and that you would consider our recommendations for reauthorization. I'd be happy to discuss these issues further and respond to questions.

SEN. JEFFORDS: Well, thank you and thank all three of you for a very helpful testimony. Let me ask you, Dr. Grace, Mr. Kenn, you heard a lot of recommendations there. Can you find any that you disagree with or that you would like to comment on?

MR. KENN: The only point that I want to make really on another item is, I want to make sure we separate prevention and care. The Ryan White Act has had a tremendous impact on the communities on a local basis. When I look at the $15.5 million that we received in Atlanta, Full County, it only costs us $250,000 in administration fees to return those dollars back to the community that received. That's one of the more efficient return services that I can point to as an example of providing the necessary care to that community. So I want to make sure that we talk about what you all had your discussion on. I think you have two different issues here. One is care which Ryan White provides, and the other one. I think you need to address another one called prevention.

SEN. JEFFORDS: Dr. Grace, any comments?

DR. GRACE: I think that the structure of the Ryan White CARE Act if very good, and I think it serves its purpose as well, and gives us a lot of maneuverability. I think that the issue of quality assurance and continued quality improvement is very important and needs to be structured into the CARE Act, which it is, but it needs to be separated out definitively from any administrative costs. That handicaps us quite a bit in watching how we're doing it, assuring what we're doing good.

I think one area that we need to work on very much, and I'm speaking more from a rural perspective which is sort of a mix of prevention and also care is outreaching--to get people who are infected already, who are out there and perhaps don't know their infected or scared to come in.

As it has been said, many of these people who are infected now or are becoming infected now are perhaps more estranged from mainstream society. We are seeing a lot of psychiatric illness in Vermont associated with this illness, increasing drug use and people, as I would specifically say, very deepens the work. And it's hard to get these people out, and it's been hard to design good outreach programs to bring them this care. And a lot of effort needs to be done in that direction because if we bring people in, get them on even rudimentary antibiotics, we can keep them out of hospitalization, and we can keep them healthy, and that would be a very important portion.

I think in a rural area perhaps the message that the epidemic has not hit yet amongst our physicians and our community, that has to be made very well made aware of it, that the epidemic has reached rural America and the city pretty hard. And I think that the providers in these areas need to know that and need to test. I think that people who are at risk need to know that and come into testing. I think the trick of testing is to make it safe, make is confidential, and make it supportive so people are not scared to come in. And I would agree that mandatory testing would be counter-productive, and I think that we have to make it much more user friendly and safe and comfortable for people. And that's where we have to go.

SEN. JEFFORDS: Let me follow up on that comment. How do we make it more likely that people will be willing to--your tested unless you don't want to be tested or--what do we do to try to really increase the amount of voluntary testing?

DR. GRACE: I would say if I could, again, looking at it from a rural perspective of why are people not getting tested. I think people are scared, and I think the usual denial is very human. And I think we have to overcome that with the messages that there are things that we can do. We can take positive steps to improve people's health, and that needs to get out.

Two, we have to assure confidentiality in the testing process and in their health care, and there's a lot of mistrust within medical systems and within governmental agencies amongst people who are at risk for HIV. But they don't trust them, and that trust has to be built. And then we have to do it with respect. We have to respect people when they come in. We have to respect them doing their care, and we have to go where they are to provide that care; and I think that would be a good start. And it's definitive answers, but these are the big jumps that I'm seeing in Vermont, that you have to jump over.

DR. BIRKHEAD: I would agree with everything that Dr. Grace has said, and I would add that we've had success in New York using community organizations and using particularly peers, individuals who may have HIV or not but live in the communities and can gain the trust of people, to do outreach to get people in to come in to be tested.

There are very positive messages one can give now about coming in to be tested. If you are positive, you can seek treatment. If you're negative--and we haven't talked about that--if you seek testing and are negative but have risk factors, you can take steps to reduce your risk factors and prevent infection in the future. So I think one of the ways where the Ryan White CARE Act has helped us is by funding community outreach workers, and that's where it would be helpful to have the Act allow us to do that more sort of directly to get people in for counseling and testing. But utilizing people who lived in the community to gain the trust is a critical component.

MR. KENN: I actually, I spent a lot of time in the schools, the grammar schools and the high schools, and I've noticed the profound affect that information or comprehensive information can have on their thinking. What we have to maintain and we don't want to lose focus of, is raising their awareness through education and what HIV and AIDS is.

We've progressed a long way in the 10 years. Now, you know, it's open and it's out on the table, and we have to make sure that it stays there, that the children understand through education exactly what this is and it's not be feared, it's to be dealt with in an open manner. I think if we continue to do that and continue to talk about and continue to go ahead and present not only to our youth but the general population exactly what HIV and AIDS is, then we have a chance to go ahead and have a positive impact on people coming forward with it, and also people practicing in regards to their sexual activity. That's where I think prevention starts--you know, through a concentration on education at all levels.

SEN. JEFFORDS: Dr. Grace, we know that the resources are particularly scarce in small rural areas and you plan to double the minimum grant provided under Title II of the Act for those states. But aside from additional resources, we've heard that some funded support service issues being health related. What are your support services most needed?

DR. GRACE: Support services, what we're seeing are the patients that are coming in with marked number or people with psychiatric illness and drug and alcohol problems. Before anybody can start taking any of these highly activentoratoral (ph) drugs, the cocktails, they need to have their drug and alcohol and psychiatric illnesses cared for because if they don't, they will not be able to take their meds properly and the patients will develop resistant viruses.

So we may spend sometimes two, four, six months a year trying to work with somebody through their housing difficulties, unemployment issues, alcohol problems before we even go anywhere near what I would intimately refer to as drugs and bucks. So the social worker actually may take a much more prominent role and team approach may take a much more prominent role in the beginning of medical care because I can't really go near them if they can't take the medicine.

So that's a big, big issue to the point that we need much better support from our psychology colleagues, from our mental health colleagues and from our drug and alcohol colleagues, I'm sure, throughout this country. And I think that efforts need to put there and those same efforts need to help channel where we're going to be doing our testing because I think this is where a lot of people are entering health systems through drug and alcohol problems and psychiatric centers versus standard medical care.

The only other thing that I would say that we need to do a push for and this is certainly true in Vermont and I assume in the rest of the areas that we need to do better education of our physicians in recognizing HIV. I think that I am concerned that people do not recognize the epidemic is here, and are stuck in the old stereotype that this is a white male gay disease. And if you are not white, gay and male, you are not being recognized; and therefore women, heterosexuals, people of color are being missed right under our noses. And we are having a golden opportunity to catch them into the medical system or we're not--somebody comes with an infection in their mouth, women, very diagnostic for HIV missed, and she goes out the door and we've missed a golden opportunity.

So there's many areas where we need to educate. We need to educate people about coming in and testing. We need to educate our providers, and we need to interact much more strongly with our psychiatric colleagues and our drug and alcohol colleagues, both for care and for getting people into the system.

SEN. JEFFORDS: Dr. Birkhead, comments?

DR. BIRKHEAD: Yeah. I would think limiting the CARE Act just the medical services would be a mistake. I've tried to indicate in my remarks that we do a lot of supportive services which are necessary for adherence to medications in addition to the factors that Dr. Grace mentioned. Homelessness is a major factor. If someone doesn't have a home, has a psychiatric illness, is a substance user trying to only being able to provide those medical services related to HIV diagnosis and therapy are going to fail because they patient's not going to be able to be ready to take medications.

So you need to really put together a comprehensive package. We refer to it as a continuum of services to take care of the social service needs, the other non-HIV medical needs, substance use needs, homelessness. All that needs to be dealt with in a comprehensive fashion. A case manager is instrumental in programming generous Medicaid programs. It covers a lot of it, but we have a large uninsured population. We also have additional services that we have for folks on Medicaid with Ryan White that are critical to the success of therapies.

SEN. JEFFORDS: I want to thank you for, three of your very, very helpful testimonies. And I commend you for what you're doing in your states. We will also reserve the right for some follow up questions. If we look through what we have gotten and see if we have anything else that you'd like to ask.

You've been very, very helpful. Thank you. We deeply appreciate your coming. And with that, we'll all go to lunch.

END

LOAD-DATE: March 7, 2000

Document 18 of 36.


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